Maternal Dementia

“Come with me,” she said, a command that once upon a time would elicit a groan. She led me into the room that is part-laundry room, part-office. I watched her open the bottom drawer of her filing cabinet. She pulled out two ledgers.

“This one has all my medical expenses.” She opened the pages to show me the rows of entries, evenly notated in handwriting I recognized from grocery lists and birthday cards and notes she wrote to school excusing my absence. That’s something you never forget: the protective lines and loops of your mother’s handwriting.

She pointed to the pages in the front. “These are things I paid for, every day things like prescriptions and lab tests.” She flipped to the pages at the back of the notebook. “These are the big medical costs – covered by insurance.” Her familiar index finger tracked down the first column, running over all the words. Oncologist. Chemotherapy. Blood transfusion. Everything detailed. Everything organized.

She opened up the second ledger. Like the first, its columns were neatly labeled and ordered; each page separated by a pile of loose receipts retained for her records. “This book has all my expenses for the year, for my taxes.”

That’s my mother, always organized, preparing to die the same pragmatic and efficient way she’s always lived.

She desperately needed help going through the upstairs backroom, she said, so we obliged, her three grown children following her up the stairs with an eagerness un-witnessed during our childhood. Backroom, in our family, is a euphemism for junk room. The downstairs backroom is a history project, filled with our parents’ past; their love letters, college papers, every issue of Good Housekeeping magazine, neatly boxed, saved since 1958 or thereabouts.
The upstairs backroom, once my brother’s room (with football-patterned wall paper) and then mine (painted white but with bright yellow and neon green shag carpet), now a third guest bedroom rarely used not only because it is the less grand of all the bedrooms, but because the bed was completely covered with bags and baubles brought home from meetings and conventions, or those awkward gifts received from well-meaning friends with taste so strikingly different that their generosity, though appreciated, is never fully utilized. At the foot of the bed, a row of boxes of belongings earmarked for a future yard sale. All the framed awards she received during her admirable career – too numerous to fit on the walls – piled on the shelves and on the floor, stacked against the wall. In the dresser drawers, things too precious to part with, ivory kid gloves from a governor’s ball, a silk purse her mother bought in Hong Kong, old black and white photographs, our baby teeth hidden in tiny envelopes, dated in my father’s handwriting.

It’s always the hardest room to clean, the one packed with things of only sentimental value.

The doctors never thought she’d live this long. Last winter, when the diagnosis of pre-leukemic myelodysplasia first pounded its gavel, they ordered a palliative treatment, a mild chemo easily administered five consecutive days in a monthly cycle, a treatment as inconvenient as having your period. In addition, frequent blood transfusions to introduce new cells to replace her tired, incompetent ones. Lots of doctor’s visits and the requisite poking and probing, but all of it relatively close to home and all of her loyal friends have rallied to help, taking turns driving her to all her appointments, checking in on her between medical visits. Though she is still more than capable to drive herself, good company is never a bad idea.

She has a quality of life that is absolutely acceptable. Of course she has slowed her crazy itinerary of activities and travel. But she still does a lot: a dizzying dance-card of lunches and dinner dates with friends, an occasional board meeting, her own shopping and errands. She lives more wisely now, doing only what she wants and using her lack of white blood cells as a good excuse to cut out anything extraneous. After each monthly transfusion, she gets a boost of energy and feels good. But her marrow won’t manufacture the good blood cells she needs, so she’s vulnerable to infection. She avoids crowds and coughing strangers. She won’t die of leukemia; she’ll die because of what the leukemia won’t let her fight.

There is, in fact, a growth in her lung. Is it a tumor? An infection? A fungal growth? The doctors aren’t sure. But the risk of an invasive procedure to determine its nature is deemed too dangerous. Even if they knew what it was, they wouldn’t treat it. A surgery brings too much risk for infection. A stronger chemotherapy also exists, but the doctor opts not to administer it because it requires a portacath, which can too easily become infected. The thought of such medical paraphernalia gives me flashbacks to when Short-pants was in the hospital and her stay was lengthened because the permanent drip became infected, leading to a sepsis that set her recovery back at least a month – and who knows how close she came to not recovering as a result of that secondary infection, an infection my mother would not be able to overcome.

But she looks so beautiful, my mother. I couldn’t take my eyes off her. She smiles. She laughs. She doesn’t look or act sick. She is living in a state of grace, I think.

Her doctor’s priority is not to cure her – since that is impossible – but to slow the disease so that she might have a quality of life while preparing for its end. For over a month now she’s been off the chemo treatment, and she’s no worse when she was on it. The doctors are baffled to see her doing so well. My mother’s constitution, in the end, is remarkable.

I asked her if she was scared. “No,” she said, “Dying is a part of life. Nobody can live forever.” This is indisputable; it can happen to any of us, any day – a fluke car crash or the diagnosis we dread – just like that. But once the sentence is offered, the disease is certain and incurable, I can only imagine what it’s like to stand on the threshold of the uncertain mystery ahead.

She shakes her head, not with resignation but with gratitude, and lists her fond memories: a happy childhood, enjoying college, all the good years with my father before he died. My siblings and I have managed not to disappoint her. She had a serious career when many women couldn’t, and even in retirement, continues to make an impact in her field. She’s traveled all over the globe. She adores her grandchildren, and this is reciprocated.

There’s no place on her ledger for remorse. She’s just counting up all the good things, year-by-year. Except that now she notices them day-to-day. You can’t imagine how much I am in awe of her, my mother, still modeling for me how to live – right up to the end.

We didn’t get in the car until nearly 10 pm. Because it had been such a beautiful day, because it was harder to concentrate on the chores that must be done to close up the country house and leave it in good order, because deep down we really didn’t want to leave – all these reasons why we didn’t manage to get the car packed as early as we’d hoped. That meant a night drive, good because it’d be cooler than a daytime highway trip. Good
because the kids would sleep through most of the drive. Good because we’d miss the heavy traffic returning to Paris at the mid-August vacation switch. It was all good, once we were en route. A little U2, Counting Crows, and Springsteen for the drive home. Iced coffee in a thermos. A string of red tail lights driving ahead of us into the night. A route that was fluide all the way to Paris. De-facto and I hardly spoke; both of us looking forward through the windshield, thinking separate thoughts, together.

Rousing sleeping children is like waking the dead-drunk, but ours are now too big to be carried. When they were toddlers, we’d hoist them over our shoulders, their lifeless limbs dangling as we climbed the stairs and delicately placed them in beds for uninterrupted sleep. But now driving dreams get disrupted and big girls carry their own backpacks up four flights of stairs.

De-facto was parking the car. I commanded bathroom visits and promised bedside kisses to good girls who put on their pajamas. I made a quick run down to the courtyard to get the bags I’d left. When I returned, I heard the girls in their bedrooms, shrieking.

“But that doesn’t go there,” said Short-pants, between sobs.

“Mama!” Buddy-roo screamed, “Everything’s put away wrong!”

I hadn’t thought to warn them. We’ve rented and loaned our apartment to people with children before, while we’re out of town. Things get a little mixed up, that’s normal. Though I’d never seen anything like this. But then, we’d never had twin boys staying in our home before.

At first glance, the room appeared to be in order. The drawers were shut and the baskets and trays all tucked neatly in their cubbyholes. But a closer inspection revealed the complete disorder that was hidden. The girls’ toys had been put away, but in a totally random fashion. Not that it’s ever in perfect order, but – more or less – each toy has its general place and its associated little pieces are usually found not far away. There was nothing logical about how the toys had been stowed. Pieces of plastic food here, there and over there, too. A dollhouse separated from its furniture, puppets stuffed in the wooden block box, wooden blocks in the plastic food bin. The Pet Shop house, petless. I made the mistake of opening the large wicker toy box, which was filled to the brim with any loose toy that apparently couldn’t find its natural home.

I could only imagine what these rooms must have looked like at the height of play. Every single ball, stuffed animal, doll and toy must have been strewn about, and then, when it was time to leave, stuffed into the closest available container.

The girls looked panicked. They were both wailing. “But this is not how we like it.”

I did my best to reassure them, explaining that this was not a 2:00 am kind of problem; this was the sort of thing that could be more effectively addressed in the morning light after a good night’s sleep. Already they were handling the toys, trying to put them in their rightful positions. I had to square off their shoulders and point them toward their mattresses. They climbed under the covers reluctantly, the both of them still sniffing final tears.

This could be a good thing, I thought, shutting the light behind me after goodnight kisses. They’re starting to appreciate the value of a little organization, how it’s easier to find things if you put them back where they go, how your things stay in better condition when they are put away nicely rather than stuffed in a toy box. All that logic I’ve been trying to cram down their throats must be seeping in.

Or have I saddled them with the anxious ball-and-chain phobia of needing things always in order? Am I burdening their up-until-now unfettered imagination? Stealing the last creative impulses of their childhood? Have I created two more neurotic people for the world, checking and double-checking that their post-it notes are at right angles on their perfectly ordered desks?

Laying in bed I could hear Buddy-roo’s tears winding down into a whimper, soon replaced by the even breathing of her slumber.

My last, smiling thoughts before drifting off to sleep: Welcome to my world, little girls.

After visiting the void – at the Centre Pompidou the other day – I strolled by another exhibit that bears mention, a cluttered and eclectic assemblage of found objects donated to the museum by the artist Daniel Cordier. Its position, immediately adjacent to the nine empty rooms of The Void, was striking. These two contrary exhibits, side by side, must have been a deliberate act.

Oh, there was stuff! An odd collection of things, natural and man-made, primitive and contemporary, cast all around, laid out on the floor and set up on musuem-ish stands. Large carved-out tree trunks, actual sugar silos from India, stood like statues on the floor. It was all very woody; I think there were even pieces of driftwood, reminding me of those silly corkscrews we made in Girl Scouts. Mounted on the wall, an array of objects of curiosity, amongst more pictures and drawings of objects of curiosity. Cordier chose to ignore the functionality of these objects and focused instead on their form, making art out of otherwise everyday items. Art that, it could be said, resembles a tag sale.

It was all a bit too interesting to take in, after digesting nine rooms of nothing.

So I turned and quietly walked out. Not in protest, just in preference.

A single sentence, buried in the middle of a text the artist had written to describe the exhibit, mounted just outside of the rooms that hosted his collection is what got my attention. Addressing the haphazard quality of his work, he wrote: “It reflects the ungovernable disorder of pleasure.”

On my way out of the museum, I tried to keep my head in those first empty rooms with their poignant memories and limitless possibility. But thoughts of the other exhibit kept encroaching, stalking me, insisting I consider this notion of pleasure and its chaotic and uncontrollable nature.

The juxtaposition of these two worlds, I realized, is the paradox of my life with children, in a nutshell.

This could be just another case of the Emperors new clothes, I told myself, riding up the escalator to see an art exhibit about nothing. De-facto took the girls to the Centre Pompidou to see it at last weekend –- a gesture to give me a few hours of coveted quiet. They returned from the museum, boisterous and enthusiastic. “There were big, empty rooms, and we ran all around,” said Buddy-roo. I gave De-facto a scratching-my-head look. “Go see it,” he said.

“Nothing seems to me to be the most potent thing in the world.” This quote from Robert Barry, an artist featured in the exhibit, “Voids. A Retrospective.” He’s one of nine “radical” artists so fascinated with nothing that they all created exhibitions made up of completely empty spaces.

The exhibit is just that: nine consecutive empty rooms. In the corridor, large panels of text describe the story of each artist’s dance with nothing. My favorite was Laurie Parsons, who in 1990 decided not to present anything for her third solo exhibition. She sent out invitations with the gallery address, but without her name or the date of the show. Eventually, she even deleted this show from her resumé, nearly erasing any trace of its existence. To respect her intentions, the exhibit literature reads, “the room devoted to her exhibition has no label.”

Because there is nothing to absorb the sound, a room with nothing in it is filled with a great quantity of noise. My footsteps echoed brightly against the empty walls. A row of spotlights hanging from the ceiling pointed at nothing along each wall. Without paintings or fixtures to absorb or deflect the light, it was almost blinding. I noticed, for the first time -– and I’m no stranger to this museum — the raw pattern of the parquet floors. Without anything in it, I saw the room for real: small imperfections in the walls, scuff marks on the floor, a lonely wire hanging from the ceiling.

I looked around at all the nothing. And then, something came to me.

A memory of another room –- an almost empty one -– in a building I once inhabited a long time ago, a renovated schoolhouse with long windows and cathedral ceilings. The rooms of the apartment were open to each other and filled with light. I remember just days after moving in, the man I lived with surprised me with a silver ten-speed bicycle for my birthday. We had only a few pieces of furniture, a handmade Shaker table, sideboard and a desk. I jumped on the bike right away and rode it around inside the apartment, a thin imprint from the tires marking a trail in the new carpet. When he wasn’t looking I took off all my clothes and rode the bicycle around in a circle again, in the nude, just to make him laugh. I remember how when he saw me, his head fell back and bounced upright again with a wide smile.

Well there’s a memory that came out of nowhere.

Whenever I walk through a museum, a blanket of quiet concentration wraps around me. As my eye is drawn to each work of art, the clutter of the day-to-day recedes from view, and a calm, focused state of mind sets in. It’s
like drinking a dose of culture, a thick and nourishing, aesthetic milkshake.

I found myself again in that art-altered state, but it was different. With nothing on the walls or in the empty room to draw my attention, my attention turned inward, to my own things, to my own empty.

The four bare walls in the next room stared me down, and even though they were of the same chalky white plaster as the first room, and the wood was the same strip-floor pattern, this empty room was different.

I thought about joining the empty room with my empty head. But I could not — as someone more disciplined at meditation would — turn away all the images that came to me. They seemed too precious, little gifts presented to me in empty boxes. Like the one I gave to my sister, when I was old enough to think of giving her a present for her birthday, but too young to have the means to purchase anything. I rummaged through the store of boxes my mother had stacked in the back room and found a small, square, white box with a thin bed of white cotton inside. I wrapped the box. My sister opened it, guessing, probably, as she tugged at the ribbon, that it was empty. How she marveled at the imaginary item, treating it as though it was the most treasured gift she’d ever received.

Given the excess of this decade, fueled by the shallow economy of obsolescence and the coercive vanity-inducing power of the media, an art exhibit about nothing feels like a vacation from the obligations of consumerism. Without the clutter of things, there is room to think, or room to unthink. And room to remember. There is room to count what matters. There is an unburdening.

Robert Barry described nothing as a way to be “free for a moment to think about what we are going to do.”

Another one of the empty rooms reminded me of a moment last summer. We’d cleared out our apartment – no small task with two small children – to re-plaster and re-paint after a particularly grueling roof repair that had lasted too long and damaged the ceiling in every room. When the painters were finally done, De-facto and I laid on the floor of our empty living room, holding hands and staring up at the pristine ceiling while the children ran around us in wide, noisy circles. Only the largest pieces of furniture remained in the room, draped in plastic. All the carpets had been rolled up and the little side-tables and child-sized chairs had been evacuated. An entire wall of shelves had been cleared out, all the books and pictures and objets d’art packed away in brown cardboard boxes. I felt no urgency to move the furniture back, or to unpack those cartons and restore the room to its cluttered, lived-in state. I liked its new wide-openness.

Later, two friends happened by, in the neighborhood taking their fresh new baby for a walk. We got the idea to call another couple and an impromptu pasta dinner party ensued. I remember sitting at that festive table –- set up smack in the center of what was an otherwise empty room -– watching my children and listening to my friends. I remember wondering if I had the courage to never unpack those boxes, if I could just leave them and let the room rest. Empty of all the objects that I’ve acquired, there’d be nothing to distract me from what is most essential: family, friends, food and wine. Nothing beats that.